August 31, 2002 Saturday
Summary: Programs with experienced neurologists and other health experts are providing more focused care
When family reasons compelled Dr. Stan Cohan to move from the East Coast to Portland 2-1/2 years ago, all he knew about Oregon was that "Bill Walton played basketball here, and at one presidential dinner they served Oregon blackberries."
But when the Providence St. Vincent neurologist started treating multiple sclerosis, his specialty, he knew he'd hit the right town.
"People started showing up in droves," Cohan said, not just from Portland but from across Oregon and as far away as Montana. "It's a hidden society here, a hidden disease society." Like other northern states, Oregon has been hit hard by MS. More than 5,200 people in Oregon and Clark County, Wash., have the degenerative nerve disease, according to the National MS Society. But until two years ago, only one Oregon clinic focused solely on the disease -- at Oregon Health & Science University -- and the state had few neurologists who concentrated on MS.
Thanks to Cohan and other health workers, however, Providence has one of two treatment programs that have started in the past two years. The second is at Legacy Meridian Park Hospital in Tualatin. A third, at the Kaiser Permanente location in Clackamas, is expected to open early in 2003.
The programs share the philosophy that MS patients need focused, specialized care from neurologists with experience treating the disease, with help from physical therapists, psychologists and other health experts.
Multiple sclerosis develops when the body's immune system starts attacking a fatty coating, called myelin, that protects nerves. In most patients, MS symptoms flare up and then relax, but in some patients grow worse. Attacks can hit often or seldom and leave nerve problems from mild numbness to blindness or paralysis. The disease usually strikes people between the ages of 20 and 40, hits women more often than men, and whites more often than other races.
No one knows what starts the attack. Most doctors think an unknown infection plays a big role -- partly because the disease becomes more common as one moves farther from the equator. That creates a global MS belt including southern Australia, Canada, northern Europe and the northern United States. Adults in the United States north of the 42nd parallel -- which runs north of the Oregon-California border -- develop MS nearly three times as often as residents of southern Texas and Florida.
"It makes you think of infectious processes, an infection that thrives better in that (cold) environment," said Dr. Paul Ash, a neurologist at Meridian Park. "What that has to do with MS, nobody knows."
The disease is so mysterious, and its symptoms so different, that some patients think many doctors don't fully understand the illness.
"MS is weird," said Northeast Portland resident Sandi Deodato, who developed MS three years ago. Her symptoms include Lhermitte's sign, a feeling of "electrical shocks running from my buttocks down my leg."
Her friend and neighbor Marie Schwab said her symptoms include bouts of forgetfulness and formication, a feeling in her arm "like there's bugs under my skin trying to get out."
Deodato and Schwab said specialized neurologists with lots of experience treating MS are best qualified to understand their concerns. Schwab said she has visited general neurologists who provided fine treatment but lacked a certain understanding of the incurable disease and its patients.
"Because general neurologists can't fix it, they don't want to deal with you," she said.
That outlook discouraged many neurologists from studying MS in the past, Cohan said, especially before effective drugs debuted 10 years ago.
Focusing on MS is also expensive. Cohan said doctors can "actually lose money" by seeing MS patients exclusively. Most insurance companies pay a fixed amount per doctor visit, making short visits more profitable. But MS patients tend to need long visits, sometimes upward of an hour, because their complex symptoms can affect many parts of their lives and require care from many experts -- physical therapists, psychologists, urologists and others.
The OHSU clinic survived because it is part of a larger center and earns grant money for research projects and drug trials. But it was overwhelmed as the only game in town. Several years ago, new patients had to wait more than three months for an appointment, said Dr. Michele Mass, a neurologist with the MS center at OHSU.
While two new doctors have cut that wait to less than a month, Mass said, the center only consults with new patients and is not taking on their long-term care.
Cohan has driven the program at Providence, which had no MS center when he arrived. He is almost exclusively devoted to MS, seeing a dozen or so patients a day, and he helps conduct a research trial on a new MS drug. Cohan said about three-quarters of his patients are newly diagnosed, while the rest want more specialized care, largely because they feel their former doctors were not aggressive enough.
Aggressive treatment is important, he said, because in the past decade, four drugs have appeared that slow the disease's progression. Ash, the Legacy neurologist, said that after 25 years, 90 percent of MS patients used to be "severely disabled." Doctors think the new drugs will cut that rate in half.
Ash and other Meridian Park doctors are researching whether medium-sized practices can afford to focus on MS. About a year ago, their hospital put various doctors, nurses and therapists, including four neurologists, into one MS program -- a sort of "one-stop shopping" for more than 200 patients.
The doctors want to measure how much extra such coordinated care costs and how much added benefit it delivers. So far, he said, some measures show that patients are improving after just one year, without a huge cost increase. Legacy has applied for a grant to continue for five more years.
Kaiser Permanente is working to create its own multidisciplinary MS care program, said Dr. Greg Zarelli, a neurologist at Kaiser's Sunnyside location in Clackamas. Driven by the clinic's longtime MS nurse, the program will dedicate one or two days a month to MS patients to visit neurologists and have nutritionists, recreational and physical therapists on hand to answer questions.
"Our goal is early next year to start this up," Zarelli said.
Such programs move toward a long-held goal of many MS patients: Getting specialized attention for many symptoms without expending energy on too many visits, said Carol Vogel Warner, president of the MS Society's Oregon Chapter. While she sees progress toward that goal on some fronts, Vogel Warner said "we're still not there yet," especially in "smaller communities, where they're really lacking in health care."
Cohan said his dream is to address that problem by creating a multistate network of neurologists in the Northwest for MS patients. He is talking with neurologists in Seattle, Yakima, Eugene, Salem and even Alaska, hoping technology and shared information can create guidelines for how best to treat MS patients -- a virtual MS center spread over thousands of patients and thousands of minds.
"That way," Cohan said, "people from the Pacific Northwest can know
that if they're unfortunate enough to get MS, they will be well cared for."
© Copyright 2002 The Oregonian